How long did it take to get diagnosed with narcolepsy?
4 years. Technically had been having symptoms for 8 years.
4 years
Thanks for your great post. My experience was very different, and still going on - at least until 3 days ago. My crazy hypersomnia started at 61, and I was diagnosed about 20 months later. Later I changed to a different sleep center and my doctor there continued with the Narcolepsy Type 2 diagnosis (he was the director of the center). He insisted that I see Neurology about my memory problems, and they moved me to one of their own, a Neurologist Sleep Specialist. Before I even met the guy he changed my diagnosis to something absolutely ridiculous and stopped my narcolepsy medications. He refused to answer any of my objections for the next seven weeks until I finally blew a cork! Okay I'm a bit of a high agitation type, but I had never gone that far with a physician. I was back to no diagnosis, and I was going nuts. He kicked me out of the practice which left me with nothing. Scared? You're not kidding I was scared. These people don't seem to care or understand what us patients are going through. What was going to happen to me?
Fortunately I found a new practice and saw the doctor just the other day. I'm back on my meds and everything is much better. Phew what a trip.
Sleep Medicine is a very difficult mine field to navigate for all of us apparently.
What a rough road,
. I am glad you advocated for yourself and found someone new. How are you doing now on your medications? - Lori (Team Member) Pretty well Lori, thanks. I have a decent life going and can do the things I like. My cognition has slowed - I was tested, but as long as I stick to one thing at a time I'm good. No meds, and I'm a useless basket case. I'm scared w/o them.
It took almost five years from when my sleepiness suddenly got way worse in 6th grade to diagnosis.
After I had a hospital stay due to "stress" (in hindsight caused by keeping myself awake and beating myself up for performing below my potential in school), I decided that I was confident in my research and sought a referral. Turns out, sleeping through Saturdays and keeping yourself awake with yt videos after school is not normal. I also didn't believe it was puperty, anymore.
That was in fall of 10th grade and I got the appointment around Easter.
Getting the right meds was (and still is) more of a problem, honestly.my daughter was told she had narcolepsy at the age of 14 years old I'm glad she got a diagnosis so young. Many people with narcolepsy symptoms are dismissed by doctors until they are well into adulthood. Did she struggle a little less after the diagnosis? Best wishes. - Lori (Team Member)
